Daily pacing w/ new defibrillator/pacemaker. Diagnosed with LVNC

My ex-wife is still a very good friend of mine and I'm trying to be supportive because she's going through a lot. When we were married she often passed out and it was always assumed it was just because she had a low ejection fraction etc. When she went to the VA doc (she's a veteran) they never found anything. She's now 45 and this past spring she was told that she has Left Ventricular Non Compaction along with the low ejection fraction. She had a pacemaker implanted before they confirmed the LVNC and then she had to have a second surgery to remove the pacemaker and install the defibrillator/pacemaker combo. Anyway, she's having a very hard time because she says she feels worse now than before. She says that pacing happens daily and it makes her have a hard time breathing and gives her a heavy chest (like when you get anxiety). She said she doesn't know what to do because it happens every day. Is this going to stop happening or is this her new normal? The docs say it's doing what its supposed to do. Thanks for reading.

 

Ryan B

4 Comments

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by Tracey_E - 2023-03-06 21:28:11

It's possible there is something else going on and it's not the pacer at all. Sometimes we get tunnel vision and blame everything on the pacer. The pacer itself should not cause those symptoms, all it does it make the heart beat faster. If they gave her a 3-lead, it can help the heart beat more efficiently. Bujt none of that should make it hard to breathe. 

How long ago was the surgery? Pericarditis is a rare compliction that can cause chest pain and trouble breathing. 

It's not uncommon to need the settings adjusted. But that still shouldn't cause what she's feeling. 

If she's going through the VA, she might want to consider paying out of pocket for a consult somewhere else. 

 

Worse after upgrade

by AgentX86 - 2023-03-06 23:21:33

There shouldn't be anything about an ICD such that it would pace differently than a pacemaker.  It is a pacemaker with the defibrillator tacked on.  Hs she had the pacemaker truned for her?  Pehaps the settings on this ICD aren't correct (for her).  I know it can be tough but this is something that has to be done right.  Inisist on it.

Thanks

by ryanb3962 - 2023-03-07 15:18:56

Tracey_E / AgentX86, thanks for the responses. She had the surgery about 6 weeks ago. They did tune the device for her and said that it's doing what it's supposed to be doing. She has a hard time getting in touch with her doctors and I think she's frustrated by that. Getting back to the symptoms: I think losing her breath wasn't correct. More like heaviness in the chest and throat like when one has anxiety. And then she says the fear kicks in which makes her panic a little bit. I was just hoping this was something one would expect in the short term and that she could take comfort in knowing that these symptoms will go away.

anxiety

by Tracey_E - 2023-03-08 08:39:11

Anxiety is real and can cause all sorts of symptoms. A cardiologist won't be much help with that, I'd go to her primary for help. 

It is very frustrating when we can't reach our team, or feel like they don't listen. Has someone gone with her to her appointments to help her advocate for herself?

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Since I got my pacemaker, I don't pass out anymore! That's a blessing in itself.